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Thursday, November 30, 2017

Pain

I have been in a ton of pain today, in an on-and-off pattern, and it is just finally catching up to me. As I am writing this, I feel like someone has twisted the middle joints of my fingers all around and they ache terribly. My ankles feel tender inside my shoes. My wrists feel like they are bruised inside the bone. "I want to cry," I have told several people, in a joking tone but in complete seriousness. I do not know if I was hoping that someone would see through it or that no one would.

I have had to catch my breath a few times when the pain has washed over me in almost unbearable waves. I have spent the day scolding myself for not starting back on my Arava sooner, and for not calling the specialty pharmacy that arranges my Humira. I have given a presentation with half of my mind focused on the words coming out of my mouth and the other half focused on my painful, painful, painful body.

There is something so simple yet so upsetting about physical pain. I have been living with it for so long that on days where it seems to win out I feel like I am letting everyone down, myself included. I have actively stopped myself from mentioning a hurting joint in conversations with friends. I do not want to bore people, and I do not want to complain. Elaine Scarry, who studies pain, writes, "to have great pain is to have certainty; to hear that another person has pain is to have doubt." I fear not being believed. I fear people thinking I am exaggerating pain. I know they do, because I am human too, and sometimes I catch myself doubting other patients, and then I repeat Scarry's quote in my mind and try to think and act more empathically. Sometimes, pain makes me feel like I am living in a different reality, one that is a few degrees removed from where my friends are.

I have also been missing Tulane, New Orleans, and all of my friends there terribly over the past week or so. I cannot explain it. I wake up and a different NOLA friend comes to mind each morning, and I wonder what they are doing and want to invite them to Bruff and to walks in Audubon Park to hear about their lives. It seems that I do not belong in New Orleans or in Chapel Hill. I exist in this tragically peculiar middle space in which I am certainly not caught up with friends at home, yet I have definitively moved away from New Orleans for at least the next two and a half years. I do not seem to understand what is going on in either place. Old friends in Chapel Hill throw around terms I do not know and mention events that I am unfamiliar with and reminisce about their freshman year experiences together and continue old traditions. They have done so many incredible things during their three semesters of college and are such accomplished students, and I cannot help but feel like all I have done is been sick. I want to try to catch up on all they have experienced, but I do not want to intrude on anything sacred, and it is almost impossible to try to figure out when I can ask questions and when I should just let everything be.

Perhaps sacredness is at the root of all of this. Whenever I try to explain New Orleans or my friends there to my Chapel Hill friends, I get this pang of guilt that what I am doing is wrong, and so I give abbreviated and sugarcoated versions of events between long pauses that allow me time to decide how to speak in a way that does not drive that pang of guilt further in. There are some stories I just don't tell. Some of them are sad and some of them are hilarious and most of them involve combinations of emotions that you would never think could go together, but it feels wrong to disclose these moments to people who weren't there, because they feel so sacred. They were all moments that took place in one of the most frightening years of my life, and with people who could never be replicated by my inadequate descriptions of them.

Obviously, I also want to avoid being the girl who goes around and tells everyone where she would rather be. None of us can stand that girl, myself included. I do not want my friends here to think that they pale in comparison to my friends in New Orleans, because that would be completely untrue. Sometimes I just want to ask them, "What if you had to leave everything behind? What if you were at a completely new school right now after loving your first year at UNC? What if you had to give up every single friend you made freshman year?" But hypothesizing about how one might feel is not the same as feeling it, and so these questions lack power.

I wish I could tell the universe that being sick for my first three semesters of college so far has taught me many lessons and introduced me to phenomenal people, and that pending approval of this revelation the universe would grant me a chance to start college over without a body that is constantly betraying me. But this is not the way of the world. So I am going to keep being startled and suffocated and saddened by the pain I experience so frequently, and I am going to keep missing my friends in New Orleans, and despite all of these difficult circumstances I am going to keep going and keep trying new things and keep trying to strengthen old friendships and keep trying to be healthy. It is the least and most I can do.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!